Science

With the current media attention due to the CDC announcement and press conference (transcript here), this is a good time to recap what is known about Morgellons, specifically the many misconceptions.

The CDC is investigating not because the evidence indicates that there is something going on, but rather because of the intense political pressure and media campaigns orchestrated by the Morgellons Research Foundation. This is very unusual. Psychologytoday.com says:

The [Morgellons] debate has grown so heated that the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. “More typically we get a very credible indication of an emerging problem from an official source,” says Dan Rutz, spokesperson for the CDC. “This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks.”

The “lesions” on Morgellons patients look exactly like the lesions on patients with Neurotic Excoriations. i.e., they look like they are self inflicted. Many Morgellons patients confess to “picking” their lesions to get the “morgs” out, and to obsessive scratching. I was rather surprised so see Dr. Joe Selby of Kaiser point to the photo on the left (below) and say: “They don’t look like any recognized skin rash” (on ABC7). When there is a very well documented condition that produces an IDENTICAL “rash” (see the photo on the right, or click here for more). Several of the photos that ABC7 used to illustrate “Morgellons” are actually lifted directly from the second dermnet.com page on neurotic excoriations.

Update: Dr Selby clarified his remarks via email:

What I’d meant to say was that the lesions don’t look like a characteristic rash other than self-inflicted lesions. We’d been speaking off camera about shingles and other characteristic, recognizable lesions. These do look like neurotic excoriations. [this does not imply] that I think these are simply neurotic excoriations. An ultimate purpose of our research is to determine whether there is reason to suspect that they are something other than or in addition to neurotic excoriations.

There are lots of cases in California because there has been a lot of sensational local media coverage in California.

The sensation of things crawling on and under your skin is a common medical symptom known as formication. It’s a symptom of hundreds of medical conditions, ranging from menopause and diabetes, to the side effects of many prescription drugs such as ritalin. Having this sensation does not mean someone is crazy. It’s just a symptom.

The fibers that people report finding are typically very small, a fraction of an inch long. Visually they appear very much like common household lint. Run your finger across the top of your monitor – that’s the type of stuff. While people claim it emerges from their skin, nobody in the last five years has produced any evidence that this happens. Not one simple study. Not one photo. Nothing. Just a lot of anecdotal evidence – usually by the patient. This photo is of my laundry lint.

The photos that people post online are just normal stuff under a cheap microscope. I took a lot of similar photos to demonstrate this. Feel free to use them for any purpose.
http://picasaweb.google.com/morgellonswatch/NotMorgellons

Other than the fibers, which you find on your skin when you look, even if you don’t have Morgellons, the list of symptoms attributed to Morgellons is very long and poorly specified and is shared by several other conditions, including Menopause.

It’s not a battle between “a real disease” and “just a delusion”. The real question is if all these people have something in common, or if they all have their own specific medical problems, and have just self-diagnosed with Morgellons because their doctors have been unable to cure them. Even if some are delusional, doctors don’t “dismiss” them. Delusions that affect your health are very serious, just as serious as physical illness. Frequently, however, delusions are simply a component in a more complex medical condition. See secondary organic delusional parasitosis for example.

The Morgellons Research Foundation has said many times that cellulose has been detected in fibers that Morgellons patients found on the skin, or in their wounds. They are also quite interested in tests that showed Agrobacterium in wounds. (Agrobacterium is a bacterium that normally infects plants, but can infect humans with weakened immune systems, particularly with chronic skin trauma).

Agrobacterium is one of number of species that produce microbial cellulose. Of course this is of interest, since some fibers tested have been shown to contain cellulose. Could those fibers be microbial cellulose from Agrobacterium?

Recently some SEM photos were released that showed “Morgellons” fibers. I demonstrated that they looked just like cotton fibers, which are also made of cellulose. But could they actually be microbial cellulose? Here’s the photo of the Morgellons fibers:

Note the scale in the bottom left, 10µm, meaning the smooth fibers are about 10-15µm across.

Now look at some microbial cellulose:

At first glance it looks plausible that it might be the same thing. But look at the scale in the bottom right (click on the photo to zoom in). It’s 2µm, meaning the microbial cellulose fibers are about 0.1µm across. 1/100th the size of the Morgellons fibers. Here’s what the microbial cellulose fibers would look like at the same scale as the Morgellons fibers.

So, no, these “Morgellons” fibers do not in any way resemble microbial cellulose from Agrobactrium. In fact, they look exactly like cotton. They are made of the same thing as cotton. Cotton is in nearly all bandages and dressings, towels, clothes, furniture and household dust. Cotton fibers are everywhere. These “Morgellons” fibers are clearly cotton.

But one mystery remains – why are the “Morgellons” patients’ samples testing positive for Agrobacterium? That’s difficult to say for sure, but consider that the samples came from patients of Raphael Stricker, who treats some people that he thinks have Morgellons with very long term intravenous antibiotics – which are often administered via an indwelling venous catheter (meaning a catheter into a vein, that you leave in all the time). Consider this report:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=8448285&cmd=showdetailview

Agrobacterium infections in humans: experience at one hospital and review.
Agrobacteria are noted primarily for their phytopathogenicity [infecting plants] and when isolated from human clinical specimens are often considered contaminants or organisms of low pathogenicity [infecting humans]. We report six cases at one hospital over a 6 1/2-year period in which infection was accompanied by a compatible clinical syndrome and review 19 cases reported in the literature. Fourteen of the 25 combined cases involved central venous catheter-associated infections. Six cases involved peritonitis, five of which occurred in patients undergoing continuous ambulatory peritoneal dialysis. Additional infections included two non-catheter-associated bacteremias, one prosthetic valve endocarditis, and two urinary tract infections. Most infections were community acquired, and restriction enzyme analysis of Agrobacterium isolates from eight patients at one hospital revealed unique patterns in each case without evidence for clonal dissemination of these strains. Agrobacterium isolates may be resistant to multiple antibiotics, and optimal therapy has not yet been determined. Agrobacteria should be recognized as opportunistic pathogens in the immunocompromised host, particularly in those with indwelling plastic catheters.

So, several sick patients from Stricker’s patient community, who probably had indwelling plastic catheters, tested positive for Agrobacterium, and found cotton in their wounds.

The Morgellons story that is fed to the media contains several talking points that the reporters gladly repeat, ignoring the most obvious of explanations. Fibers are found on the skin. Fuzzballs are somehow deemed to look unusual. Fibers are found to glow under UV light. Patients’ physical symptoms are dismissed as psychological. Patients did not make their own lesions.

One that comes up over and over, is that Morgellons is found most in California, Texas and Florida, and there are hotspots of it in various cities. This is generally quite explainable by the fact that more people live in those states, and cities, so obviously there would be more cases there. But there is one claim that seems to actually give weight to the MRFs claim of an unusual distribution. From their web site:

Although California represents 12% of the US population, 24% of all families in the U.S. who have registered with the Morgellons Research Foundation reside in California

So that’s twice as many cases as you would expect by random chance! Clearly something is going on! Does this prove Morgellons?

Firstly, it simply shows that the MRF database does not represent a random sampling of the US population. You could interpret this in a number of ways, both pro and con. If Morgellons were an infectious disease, then you could argue that you would expect a more even spread, and the concentration in California perhaps indicates it’s something environmental, like ticks. (unfortunately, most ticks are in the Eastern US).

But we don’t really need to reach very far for explanations. Indeed, we should be remembering Occam here, and not introducing new entities into the mix. The reason for the high concentration of cases in California can be found on one page of the MRF’s web site, their list of television news stories about Morgellons.

http://morgellons.org/tele.htm

One thing that becomes clear is that there are simply a lot of television shows on Morgellons that showed in California. I broke it down into California and Texas

Look how much bigger the cities are in California. Even though the number of shows is about the same, there’s nearly three times the audience exposure in CA as there is in TX. When you take the relative population of CA (36.5Million) and TX(23.5 MIllion), you come up with a figure of 1.7 times. That 1.7 times as many people (as a percentage of the state population) in California saw a local TV show on Morgellons as did in Texas (math: (57.7/36.5)/(21.8/23.5) = 1.7). Given that the Texas figures are also going to be above the national average, due to its extensive local TV coverage, then it’s hardly surprising that California has 2 times the national average of the incidence of people who heard about Morgellons and decided to visit the MRF web site, and eventually register.

So you see, the MRF’s database IS a random sampling of the US population. Just weighted by media coverage.

“patients’ symptoms are often dismissed as psychological by health care practitioners”
Morgellons Research Foundation web site

“Physical and neurological symptoms are often dismissed or ignored”
Oklahoma State University Center for Health Sciences Center for the Investigation of Morgellons Disease

The above statements are representative of something that is often repeated regarding Morgellons, in that the patients are somehow being ignored, or dismissed. Particularly that their symptoms are being dismissed as “psychological”.

This conjures up various scenarios, of various plausibility for each of the Morgellons symptoms:

Patient: Doctor, I’ve got this horrible itching sensation, it keeps me awake at night, it feels like bugs crawling under my skin.
Doctor: You’re just imagining it.

Patient: Doctor, I’ve got these nasty looking sores on my arms
Doctor: You’re just imagining them

Patient: Doctor, I feel tired all the time.
Doctor: You’re just imagining it.

Patient: Doctor, I found some fibers on my skin, some were in the sore I showed you.
Doctor: You’re just imagining it.

Patient: Doctor, I saw a cobalt blue fiber poking out of the scalp, I tried to pull it out, but it withdrew back into the scalp and reappeared a few moments later in another area
Doctor: Sounds unlikely.

Of these, only the last is something that is likely going to be “dismissed as psychological”. The “finding of fibers on the skin” is not going to be dismissed as psychological, since fibers are everywhere, and everyone has them on their skin.

The root symptoms for many people who identify as having Morgellons are itching and crawling sensations. This causes people to scratch and pick at their skin, hence producing sores. The itching causes sleep deprivation, which might lead to fatigue and confusion.

So, under what circumstances would a doctor dismiss itching as “purely psychological”? Suppose you went to the doctor, and told him: “Doctor, I’m itching really bad, feels like bugs crawling under my skin”. How quickly would the doctor say “you are just imagining it”?

Consider for a second all the causes of itching, if we go to http://www.wrongdiagnosis.com/symptoms/itching_skin/causes.htm, you’ll see there are 646 disease that have itching as a symptom. Not only that, but there are 1742 medications that cause itching skin. Given this vast array of possible causes, obviously a doctor is not going to dismiss every report of itching as being “purely psychological”.

But here our patent said “it feels like bugs crawling under my skin”. Would a doctor automatically dismiss this? No. This sensation is generally either an actual infestation of bugs, like scabies, or it’s “formication“, which is a well known symptom of many physical conditions including diabetes and menopause.

So what would the doctor dismiss as purely psychological? Well, suppose the patient had actually said “I think I’ve got bugs crawling under my skin”. The doctor would look at their skin, and if there were no scabies they would explain that this is formication, and then go on to look for possible causes. At this stage there is no dismissing.

Suppose that no scabies are found, formication is explained, and the patient still continues to say “I believe I have bugs under my skin”, then at this stage, the doctor might begin to suspect that the patient is delusional.

So what is the doctor actually dismissing? They are dismissing the delusion as purely psychological. The thing that is psychological is the fixed false belief that their crawling and biting sensations are caused by parasites under their skin. This does not mean that the crawling and biting sensations are psychological.

That’s important, so I’m going to repeat it.

Just because a patient holds a false belief regarding the cause their itching, biting and crawling sensations, this does not mean their itching biting and crawling sensations are “purely psychological”. The only thing that is in any sense “purely psychological” is their false belief about the cause of those sensations.

If I have headaches, but I attribute those headaches to FBI mind control rays, then this does not mean that my headaches are purely psychological. It just means I hold a delusional belief about the cause of those headaches.

So, yes, delusions are psychological. If a patient thinks that living fibers are burrowing into his eyeballs, then that’s probably psychological. But even here, doctors do not “dismiss”. A delusion can be quite a serious problem. It’s hardly something to brush aside. But at the same time, it’s very difficult to discuss with the patient. For the patient, if you question their delusion, you are questioning the whole basis of their illness. To these patients, it might feel like you are “dismissing their symptoms as psychological”, when in fact you are simply noting that they have one delusional belief regarding their real physical symptoms.

The MRF and the OSU-CHS-CIMD exist to raise public awareness of Morgellons and to raise funds. So it suits their purposes to claim that patients are having their physical symptoms dismissed. But it’s ultimately disingenuous, as doctors do NOT dismiss physical symptoms. They don’t even dismiss psychological symptoms. But some patients hold delusional beliefs regarding the causes of their physical symptoms. They then claim that, since the doctor tried to explain that this was a delusion (and perhaps treat it), then their physical symptoms were being dismissed as psychological.

In reality, the only symptoms that were being “dismissed” as psychological, were the psychological symptoms.

nosology \nō-ˈsä-lə-jē, -ˈzä-\ noun, probably from New Latin nosologia, from Greek nosos disease + New Latin –logia –logy. circa 1721

 

1 : a classification or list of diseases

2 : a branch of medical science that deals with classification of diseases

In any discussion, particularly in science, the defining of terms is vital to progress. If you think a term means one thing, and someone else thinks it means something else, then unless you address this difference, you are not going to come to any meaningful agreement.

This problem is particularly apparent in the phenomenon of “Morgellons“. There are two particular terms that cause problems. The first is, obviously, “Morgellons” itself, and the second is “Delusional Parasitosis” (DP). The confusion between these terms has led to the doubly misunderstood (and hence incorrect) statement that “Morgellons is DP”. Morgellons is not DP.

For a doctor, “Morgellons” is a list of symptoms. Itching, lesions, finding fibers, fatigue, confusion and a few others. It’s a rather broad list, and various people define it slightly differently, and the extent to which you have to have all the symptoms varies. Stricker and Savely say you can have Morgellons without finding fibers. Most doctors don’t think that this list of symptoms really defines a new disease, and the conditions of people who self-diagnose with Morgellons is rather better explained by existing diseases.

For the patient however, “Morgellons” is “the disease that is causing my problems”. So if they hear someone say “Morgellons is not real”, it’s like someone said “your problems are not real”. The patient will quite understandably get very angry when someone tells them that their problems are not real, because their problems ARE real.

This is compounded when people talk about DP. The definition of DP will vary based on who you ask. Some people say that if there is a physical condition underlying your false belief in parasites, then that’s NOT DP. DP, they will say, is present when:

The patients have no obvious cognitive impairment, and abnormal organic factors are absent. True infestations and primary systemic diseases that cause pruritus are not involved. Primary skin lesions are not present.

In other words, if the patient has something wrong with them, such as diabetes, or if their formication is caused by a physical condition such as menopause, then they can’t have DP. If they have obvious cognitive impairment, then they can’t have DP either. If they have a skin condition like eczema, or folliculitis, then they can’t have DP.

This restrictive definition of DP allows proponents of Morgellons to say not only that “Morgellons is not DP”, but “people with Morgellons cannot have DP”, since DP is a purely psychiatric condition with one mental symptom, and Morgellons includes both additional physical symptoms (fatigue, tooth loss, etc) , and additional mental symptoms (brain fog, confusion, etc.)

The problem here is not with the Morgellons community, they are actually using definitions of DP to come up with a logically consistent conclusion. The problem here is with the dermatology community for both their broad statements like: “Morgellons is DP” and their simultaneously conflicting statements like: “DP is a single symptom mental illness”. Neither of these statement is correct.

The reality is that Morgellons is a list of symptoms of unknown statistical significance, and DP is the unshakable false belief that one is infested by parasites, and comes in primary, secondary functional, and secondary organic forms.

Dermatologists, of course, appreciate the complexity of the situation, but they do not seem to be communicating it very well. They would make their jobs a lot easier if they made a little effort to communicate these distinctions, both to their patients, and to the media.

There have been a couple of Morgellons articles in British publications recently, one in New Scientist (subscription required):

http://www.newscientist.com/channel/health/mg19526210.700-morgellons-disease-the-itch-that-wont-be-scratched.html

And another in the Daily Mail/London Evening Standard, from their “This is London” web site:

http://www.thisislondon.co.uk/news/article-23412621-details/M/article.do

The latter article illustrates many problems endemic in the “Morgellons” media phenomenon – a mixture of superficial reporting, and blatant contradictions.

Firstly, they start out on the wrong foot by describing Morgellons as:

The symptoms sound like something from The X Files – sufferers complain of a crawling sensation all over the body, egg-like lumps under the skin and, even more bizarrely, cuts which produce tiny red and blue fibres.

“egg-like lumps” suggests egg sized lumps, which is not a symptom, and nobody would describe their sores as “cuts”, so already the reader has totally the wrong idea as to what we are discussing.

Then we get this photo of the hand of someone who claims to have Morgellons. This is an interesting link to the quackery surrounding Morgellons. Now I’m not sure who they got this photo from, but I first saw it over a year ago when Russell Altman emailed it to me (this is the original photo, the one of the article is cropped and enhanced slightly). It was taken March 21, 2006 and is the hand of “Connie“, someone that Russell claims he cured with the quack remedy “NutraSilver“, which he also conveniently sells. There is a lot of selling of remedies for Morgellons.

Then we get the patient, Beverly Warren, 63, from Manchester, who says “It feels like tiny insects crawling of biting under my skin“, and later “I scratch and scratch, bit it doesn’t help“, and the article then notes “Beverley’s arms are covered with dozen of sores“.

Just like Beverly, many people who have Morgellons have no problem describing how the scratch for hours, or even how they spend hours picking at their skin. Yet somehow, as in this article, the connection is not made that the scratching and the picking as actually causing the sores and the lesions. It’s called Neurotic Excoriations, and looks like the photo on the right:

And the sensation of insects under the skin is also well known. It’s called formication, and it’s caused by many physical conditions, including Menopause, diabetes, or reactions to prescription drugs. Formication can lead to scratching, which can damage the skin, leading to more itching and formication, which creates a vicious itch-scratch-itch cycle that can be impossible to break.

It’s quite possible that 11 years ago, Beverly, then aged 52, was going through menopause, and was suffering from formication(as 20% of menopausal women do, to some degree), she scratched, and this precipitated her current condition. But again, it could be any number of things.

Moving on, we have Rita, 47, whose symptoms started at age 43, and who illustrates the nonsense behind the claim that “According to Morgellons sufferers doctors are dismissive of their illness“:

“The doctors are very dismissive. One doctor sent the fibres off to a lab, but all she said was that nothing abnormal had been detected.” Among Morgellons sufferers, this is a common experience.

Here’s the contradiction: the doctors are “very dismissive” and yet they “sent the fibers off to a lab“. How is this dismissive? They analyzed the fibers, and found they were nothing abnormal. That sounds like they took her claims very seriously. Beverly, also, speaks of many “doctors and dermatologists”, and “two skin biopsies” – again this does not sound like she has been dismissed, in fact it seems like doctors have gone to some length to find out what is wrong with her.

The article wraps it up with some words from “a handful of experts“, without noting that they are actually not experts in dermatology, nor in fiber analysis, or epidemiology, or anything that might help them discern what is actually going on.

The real experts, dermatologists and psychologists, are not dismissive. In fact they take this problem very seriously, and have a great deal of sympathy for those who are suffering from these symptoms. Saying a condition has a psychological component is not dismissing it, it’s correctly identifying it, so it can be properly treated.